Illness Trajectory,the Diagnostic Discovery of Hepatitis C Disease,and “The Accidental Tourist”

Abstract

This article presents a set of observations on some of the ways in which individuals come to learn that they are infected with the hepatitis C virus (HCV). In doing so, we draw on field data collected in a study of informed consent in HCV clinical research and published reports on HCV surveillance and testing. The concept of illness trajectory is used to illustrate the process of disease discovery. Various circumstances, some related and some unrelated to HCV symptoms, initiate the illness trajectory and the diagnostic search for HCV disease. We borrow the concept of “The Accidental Tourist” to illustrate the unexpected journey of HCV disease discovery. We conclude by considering some implications of the diagnostic search phase of the HCV trajectory for HCV social policy, clinical care, and future research.